Hi, I've just been diagnosed with CCC at stage 1c due to cancer cells being found in peritoneal wash. I have an appointment on Monday with oncologist to discuss chemotherapy. I'm reading so much conflicting information, stats, etc, and terrifying myself. What I'm gathering so far is the early stage is good, the type less so. Can anyone else with CCC share any positive stories?
Clear Cell Carcinoma stage 1c: Hi, I've just been... - My Ovacome
Clear Cell Carcinoma stage 1c
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RestlessCreature
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You are right about early stage diagnosis giving you a real benefit. I am hgs not clear cell so I will leave it to others to give you the low down. Don’t forget the Ovacome helpline can talk you through the options too xx
Thank you for responding, I am still plucking up courage to call the helpline. I hope you are doing well
Hi, Restless Creature, my diagnosis is also clear cell 1c after my hysterectomy in December 2021. I’ve just had my 4th chemo with 2 more to go. I’ve only just started this journey but there are ladies on this site that are doing really well years after diagnosis with CCC so that is really positive news. Hope all goes well at your oncology appointment xx
Hi, thank you for responding - I hope chemo is going as smoothly as possible
Hi, my 4th cycle was delayed by a week as I had low white cell count so have been given injections to boost them so hopefully I’ll be on track for 5th session 🤞. I haven’t had any sickness only slight nausea feelings occasionally and I’ve maintained my appetite throughout treatments. The worst side effect for me is the constipation that lasts for 4/5 days after treatment and I have to take laxatives to make me go (I usually ‘go everyday’)! So I would say try and drink lots and lots of water throughout treatment although we’re all different and you may not suffer from this! I’ve had very slight neuropathy in my fingers and achy bone pain/fatigue for the first week but then usually feel ok before the next cycle! I’m over half way through and looking forward to having a holiday when chemo finishes. If you want to ask me anything I’m happy to answer if I can xx
Thank you - I will be starting chemo in a few weeks so good to hear it's manageable. Can I ask are you on Carboplatin/Paclitaxal?
Hi yes I’m on both of those x
Thank you, I have to keep working as much as I can throughout for financial reasons, was so worried I'd be too poorly to manage, but this is reassuring. I hope the last few treatments go well.
My diagnosis is clear cell 3c and I have been on the trial drug AZD6738, also called Celerasetib, for over four years. Hopefully, at stage 1 , you will not need further treatment but , if you do, there are treatments out there for you. Fingers crossed you don’t need them though!
Thank you, that is good to hear. Glad to hear you are doing well
Hi,I already had a different cancer when I was diagnosed with Clear Cell 1c in January 13. My GP (now ex!) was no help whatsoever, and I ended up walking into Addenbrookes A&E with a 26cms bump protruding from my tummy. As soon as I met my surgeon he told me "this is so urgent" and operated on me the next day. I was mobile after one day and home after 4. It was found that I had my original cancer in both ovaries and clear cell in my right. I had 6 x of Carboplatin, delayed a couple of times due to low platlets, and was given a blood transfusion. The chemo was tolerable, especially considering what others have to endure, and I did not lose my hair - I think this is normally the case. Addenbrookes monitored me for 5 years. My CA125 was 7 when I had the cancer and 2 when I was discharged from gyne oncology in 2018. My other cancer is still with me and progressing (currently 22 years) but, so far, no return of the Clear Cell at 9 years. If my Clear Cell does return, I will be straight back here seeking advice from others. Wishing you good luck - hope you manage to join my gang!
Wow, that's quite a story. Your username obviously suits you. I feel I've been so lucky with my GP having heard some horror stories. Good luck to you too and thank you for the welcome
Sounds a bit like my story, had 4 blood clots, sent by specialist at hospital to see gynaecologist, pelvic mass suspected, nothing found. However, specialist said that there was a large mass in my abdomen, heading for hospital this Thursday to find out what this is, it is palpable and makes my stomach stick out at an odd angle. What did you have and did it sound like mine. Am so scared of what I am about to face. Specialist said that multiple blood clots are nearly always caused by a cancer somewhere.
Hi jenban25,Sorry to hear of the problems you are having. Mine was described as a pelvic mass. I am still not sure of the technicalities, but I had a small speck of ovarian cancer on the right ovary which was enclosed inside a cyst type structure which kept growing. This burst during surgery so I went from 1a to 1c. My lump was low down and my surgeon said I was the equivalent of a woman who was 6 months pregnant. Your oncology team are on the case and hopefully everything will become clear soon and you will know what you are dealing with. Very best wishes for Thursday.
Hello Devoted to life 55,I was interested to hear that you are regularly scanned . Is that for your original cancer or for the clear cell ? I had clear cell 1C and was discharged at 5 years . I don’t have scans at all now , unfortunately. You have done very well to have not recurred with clear cell . Similar to you , I will be 8 years in June .
Angel- teal x
Hi Angle - teal 13,Yes, you are correct, I am scanned every 6 months for my other cancer. Fortunately, my oncologist splits his time between gynae-oncology and endocrine oncology, so he is able to check me for both on the same scans. I was discharged from gynae-oncology in 2018 and have had no contact since.
Regards
Thank you for replying to my question . Yes , that’s rather fortuitous that you can be checked for both as it ‘ s reassuring to know all looks good! It seems to be pretty standard to be discharged with no further scans at the 5 year mark , unless one has symptoms , of course . I sometimes feel I ‘d like a scan every so often just for reassurance , but it ‘s not deemed necessary . I do know that with clear cell ( from my consultant and from hearing from other clear cell ladies , that it tends to come back in the first term at or two and after that it becomes much less likely . I think each type is different in terms of the timescale of recurrence and progression and with clear cell being fast growing the one to two years makes sense . I meant to say , I also had a large pelvic mass like a baby melon ! Very typical of clear cell , from what I have read . It ‘s good to connect with people who have the same type ! When I was first diagnosed I felt quite isolated , as most people I met had breast cancer and the few who had ovarian had the more usual cell types . Clear cell is not very common and behaves quite differently too . Well , I hope you continue to enjoy good health and happy times . Wishing you all the best . Angel-teal x
Dear Restless Creature ,I was in a similar situation to you in June 2014 when I was diagnosed with clear cell 1C ovarian cancer . I had the usual surgery and 6 cycles of chemo. I have never had a recurrence , touch wood !So that’s coming up for 8 years ! Like you , I was fairly daunted by the poor stats on the internet. Early stages generally fare quite well but the later stages can be less favourable with clear cell. It’s because it can become less responsive to chemo as time goes on , I believe. However , as many people will tell you , we are not stats but individuals and so it depends on how each person responds . At the time , I wondered if the chemo would work but in fact my results were very good and I responded well . If I were at that stage again , I would not Google in search of information other than the Mac Millan and Cancer Research U.K etc sites because I was bamboozled by it all and began to think in a negative way . My Consultant explained what it all meant for me and her information was very valuable because it was based on me and the fact that she knew exactly what I had . So I took on board what she said and stopped Googling and ignored all the dreadful stats ! It was a good plan because I remained positive ( well most of the time!) and hopeful . I concentrated on getting better , eating well and exercising and living life to the full . It can be an uncertain journey but I decided to enjoy the time while I was well and should I need further periods of treatment , I would deal with it if and when it happened . I tried not to think too far ahead . This strategy has worked very well for me and I feel very fortunate to have remained disease free so far . I seldom think about having OC now. I don’t know what’s around the corner for me , but I am determined not to ruin the life I have today by worrying about something I can do nothing about ie a recurrence . This mindset works well for me , anyway .
I am glad I opted for the chemotherapy . My oncologist said it was a belt and braces approach . It meant I had done all I could to eradicate it . Your Consultant will guide you through the chemo options Ask as much as you can - I always take a notebook with a list of questions! You are fortunate to have been diagnosed early at 1C , so that’s the big positive . It would be great to hear how you get on and if there are things you’d like to know then there are lots of lovely ladies on this site who ‘d be happy to help . So just ask ! Wishing you good luck on Monday with the Oncologist .
Angel-teal xx
Thank you so much, your story and your positivity is lovely and just what I needed to hear this evening
I was diagnosed with clear cell cancer 3C four and a half years ago. After major surgery and a lot of chemo, none of which was any fun, I am still in remission! I feel pretty good, in fact. My best advice is have a good doctor and listen to what they say, eat and sleep well and keep a positive outlook ( as hard as that may be! It does help.). Best to you!
Thank you so much, I'm so glad to hear you're still doing well
Hello Ravenmuse!Interested to hear that you are also clear cell and still in remission. That’s famtastic . I was also interested to hear that they discovered you had endometriosis and required a lengthy surgery to clean it up . I was exactly the same- I never knew I had endometriosis as I was symptom - free all my life but inside it was a bit of a mess and I lost a lot of blood due to the clean up procedure resulting in a blood transfusion to top me up ! I have since found out that many clear cell patients have a history of endometriosis and there is a possible link ie it could be induced by the endometriosis . It possibly explains why I got OC as I ticked none of the boxes for susceptibility . Wishing you continued good heath ,
Best regards ,
Angel - teal
Hi Angel-Teal, I have also been told that I had endometriosis which I believe was quite extensive, lost 800mls of blood so didn’t need a transfusion as Dr said it’s given if you lose 1 litre! I didn’t know I had it either so was a surprise to me also. I’m still awaiting results of Braca tests although they don’t think I’ll have that because it’s clear cell, also being tested for mismatch repair although I’m not quite sure what that is ! Best wishes xx
Hello again! That’s really interesting that you had endometriosis too . I lost a litre of blood so what you said explains why I got a transfusion . They said mine was historic endometriosis , as at the time of diagnosis I was 56 ( now 64) and had passed the menopause . It seems to be very common in people with clear cell but not other types of OC . From what I have read , it seems that the experts think that all that extra haem ( from blood) in the body cavity due to endometriosis could encourage OC to develop in some people. I was also tested for Braca genes but was negative for that . My tumour was tested for oestrogen receptors and it was oestrogen negative ,to their surprise,( many are positive) and it means my type didn’t feed off oestrogen . ( or so I understand!) .
The mismatch repair is to do with Lynch syndrome , I think. People who have that usually have a history of multiple cancers in their family , particularly bowel . When your DNA gets damaged , the body repairs it but in people with Lynch syndrome the repair genes are faulty and don’t repair it and that can cause cancer .
It’s good to be tested for these things as it can help with treatment options in the future, if needed .
Take care and Happy Easter !
Xx
I also lost a lot of blood in surgery and needed a transfusion, seems to be a common theme, though none of my doctors have mentioned endo as a possible cause. Your comment about oestrogen receptors made me think - I'm on HRT since surgery as was having a horrible time with mood swings and hot flushes, are they likely to make me stop taking this now I'm diagnosed? Appreciate you might not know the answer to this but I just hadn't thought, and HRT is saving my sanity right now.
Just noticed your reply about HRT . Well about three years ago I asked about HRT and my Oncolgist looked at my file to see my tumour test results . Our hospital routinely tests the tumour for receptors but the hospital I was sent to for surgery further away ( due to a sudden cancellation) does not test routinely . So there were no results in the file on receptors so she requested it to be tested and it came back oestrogen receptor negative . I only had asked about HRT for urinary and dryness problems so she said I could have the cream ( vaginal) as I was negative . It has been very helpful . I did have hot flushes at the menopause and they had subsided but seemed to come back a bit post surgery . However , I felt they were manageable so I did not ask for the full HRT which works throughout the body and not just locally like the cream . So , firstly , do you know if you are receptor positive or negative ? Positive seems to be more common but everyone is different . Your Oncolgist may feel that you have a strong need for HRT so that may well help them decide what’s best for you . Please don’t panic and ask about your own particular situation . It may be that it’s fine for you , especially if it’s keeping you sane . I think there might be a little more risk if you are oestrogen receptor positive but like everything , risk has to be weighed up against benefits , so your Oncologist will keep you right . I am not medical , but have a bioscience background so I understand a little bit about this but not that much ( receptors etc) so asking your Oncologist will give you the answers you need . I have explained what happened to me in case it helps . Sounds like it gives you great relief so hopefully it may be fine . Hope that answers your question . Xx
I don't know if they test for receptors, I will ask at next appointment. I have read a few studies today which say HRT after OC diagnosis doesn't seem to have any negative impact on survival, but that many doctors are still reluctant to prescribe it because it's associated with increased risk of being diagnosed in the first place. So I wonder what they will say to me. It's a tricky one as I don't want to increase my risk of relapse obviously but at the same time don't want to stop something beneficial to me "just in case" if there's no real evidence it could harm me. I think doctors - especially male ones! - don't always realise how vital HRT can be to quality of life so will just rule it out without really weighing up the cost benefits. I started another thread to see if any others have thoughts or experiences on this issue.
Yes , I think that could well be it and erring on the safe side , maybe a bit too much . My Oncologist is female , so that helps , but I know just what you mean about a male maybe not really fully appreciating the need for HRT . Your GP might also be able to give good advice. I agree , it’s something to fully investigate so you are fully informed .Xx
Dear Restless Creature, I’ve been reading this thread bc I was also diagnosed w 1C clear cell arising from endometriosis that I didn’t know I had. Premenopausal having a horrifically difficult time w surgical menopause and desperate for some HRT. I wanted to see what you ended up deciding about your HRT and what the doctors said. Thanks for the update! And I agree, male doctors are not compassionate about HRT use or weighing benefits v risks. I think female doctors are the best. Wish there were more of them. Hugs to you.
Hi, I didn't have a problem getting HRT in the end, my oncologist and GP were happy for me to stay on it - I was on patches for a while then they seemed to get less effective so I transitioned onto gel. I felt terrible when the patches stopped working so I can only imagine how you've been feeling. I'm one year post final chemo now. I hope you are doing well, and are able to speak to your doctor about HRT.
Thank you so much, Restless. I tested the tumor for the hormone receptors and it turned out to be estrogen receptor positive and PR receptor negative; did you test yours for the ER/PR receptors? There’s a theoretical, although unproven risk/fear of HRT when one has a ER positive “thing” so I’m not sure what the ultimate decision will be. Basically, doctors don’t know 🤷♀️. I am glad you were able to take HRT bc it has so many health benefits. I’d think it’s very unnatural for a premenopausal body to run on absolutely no hormones. That can’t be healthy… even post menopausal bodies have some hormones, whereas surgical menopause leaves a female body with 0 hormones. Logic is telling me, this can’t be good so I don’t understand doctors’ apprehension of HRT. Or at least, unaffected ovaries should be spared if there’s such a fear of HRT🤷♀️.
I’m clear cell 1C too and 1b endometrial. I had chemo and radio after as a belt and braces approach. I had Carboplatin/Paclitaxal combo so did lose my hair, but it was doable and not as bad as I feared (the radio was for the endometrial cancer not OC). I’ll be three years post op this Friday and started the rest of my treatment about two months later. Good luck with the next instalment x
Thank you so much. Just been told I'm having the same chemo regime as you, the list of side effects is very daunting so it's good to hear it is perhaps not as bad as feared. Thank you for sharing
Hello again ! I agree with yorkie pud - I also had the same combo and lost my hair. It’s not exactly a breeze , but very doable and better than I expected! I lost my hair too , but it came back and is as good as ever after the initial curly stage. The best tip I was given by the nurses was to take the anti sickness meds even if you think you don’t need them . I did exactly as I was told(!) and I had no sickness at all and after the few days of real fatigue at the start of each cycle , I began to perk up and was able to enjoy life with gentle activities until the next infusion . I just listened to my body and snoozed when I needed to and was kind to myself . Fatigue was the hardest part , but it’ s well worth it to zap anything remaining ! My only annoying symptom was partial loss of feeling in my finger tips . My toes were hardly affected . It’s neuropathy and my fingers started feeling a bit numb . Towards the end of my chemo cycles the Consultant reduced my dose by 25 % to 75 % of the original .My neuropathy did not get any worse and the feeling was fully restored in the months after chemo ended. If the dose is not reduced , it could lead to permanent damage . Some people develop a little bit of neuropathy and that’s quite normal but mine was steadily getting worse so that’s why they reduced my dose. The list of side effects is extensive but you probably won’t have more than a few of them . Take care and I hope it all goes well for you .
Best regards,
Angel- teal x
Thank you! They've said I can try a cold cap which may or may not help limit the hair loss, so i figure that's worth a try anyway. And been cheering myself up shopping for some funky bandanas today. I wear my hair short anyway so at least it won't take long to grow back to normal after. Trying to stay positive and distracted which seems like all I can do at this stage - honestly now I just want to get started as the sooner started the sooner finished.
Hello ! You sound really positive and on top of things - that’s great . The wig lady at the hairdressers helped me to tie scarves and showed me very soft head wraps made of a bamboo mix . The colours were fab and really cheered me up ! I also got soft cotton caps for bedtime as I found my head got cold at night . I did not try the cold cap because I am a baby when it comes to cold things . I get brain freeze with very cold ice cream ! I also get occasional migraines and I was worried the cold might bring one on ( heat , cold and bright light can affect me ) but that’s just because I am a bit sensitive . I saw other people try it and they seemed to cope fine . They said after a while that you get used to it , rather like when you first get into a very cold pool and then it becomes bearable after a few minutes. Have you thought about a wig ? I loved mine and wore it a lot . It took me to my brother and my son’s weddings and also his graduation . It also helped me to look decent in the photos ! I found it very comfortable with a little nylon wig liner which looks like a very large pop sock . I have friends, though, who can’t be bothered with wigs . For me , it helped me face the world and feel much more like the normal me . My wig was very like my normal hair , dark and wavy .
Anyway , I hope that helps .
Best of luck with everything and look forward to hearing how you are doing .
Xx
I think because my hair is very short anyway a wig of similar length wouldn't really work, and I wouldn't want to go long as that would be a change as obvious as going bald! It's great to hear it worked for you though. It probably seems weird I'm worried about hair loss when my hair is already short but it's still such a part of my identity and such a visual sign of the chemo. But I think I will get by with bandanas and hats (assuming the cold cap doesn't work). Thanks for the help and all the good information you're sharing.
Yes , I see what you mean and understand totally about your hair and your identity ! I am just the same ! Most of my friends with C were very happy with scarves and bandanas in great colours and they are so comfortable too . If you feel happy then that’s half the battle . I also went to the beauty session available countrywide, called Look good , Feel Better for help with face and make up when you have cancer . It was fantastic even if you don’t wear a lot, with tips for pencilling in eyebrows and how to do lippy and rouge. It really helped me towards a healthy look when my face looked a bit pale and not so great ! You get a lovely bag of new items to take home including perfume . Plus you meet people with C . Well best of luck and if you have questions about anything , I ‘d be very happy to try and answer/ help . I have found great reassurance from this site - you realise others have been in the same boat as you and their worries are similar or the same . Xx
My last dose was reduced as well as the neuropathy hadn’t abated between cycles. Like you, it went away in the weeks after finishing and no ill effects from it since x
The lists of possible side effects can send you dotty but they’re all possible and not definite. Some are very common of course and the worst bit is wondering how you’ll react. I’ll second Angel-teal13 advice to take the anti nausea and always tell your team if they’re not working, they don’t want you to be sick and prevention is easier to manage than stopping it. Happy to share other tips and experiences if you ever want/need them xx
Hello
I had a hysterectomy for a dermoid cyst and painful periods in August 2020 . Histology results have shown endometriod adenocarcinoma grade 1 and clear cell carcinoma in my left ovary and on my left fallopian tube. Underwent debulking surgery in October 2020 and no other cancer was found. My ovarian cancer was staged as 2a . At the initial time of blood test my ca125 was 34, by the time i had surgery it was 53.
Completed first line treatment March 2021 CT scan came back no evidence of disease and my CA125 was 5. So as of May 2021 I am in remission.
My latest CA125 was 3 and my scan was clear.
I am suffering from neuropathy in my hands and feet and fatigue.
I have not managed to go back to work yet. I am hopeful i will be able to in the near future. I take each day as it comes and enjoy spending time with my family.
I wish you well with your treatment.
Love
Nus
Thank you for sharing your story, it's reassuring to hear from so many amazing people. Is it the ongoing neuropathy that's affected your ability to work if you don't mind me asking? I hope things continue to go well for you.
Of course i dont mind.
Its several things , i am a forensic scientist and its quite a demanding job . I used to commute 3 days a week...a fairly long drive 70 miles .
I suffer from short term memory problems, fatigue, sleeplessness and neuropathy. All these things combined make it difficult to go back to work.
I am going to start lignacaine infusions in a few weeks to manage the neuropathy symptoms. Hoping it will improve things.
Love
Nus
Hi, I had the same diagnosis 10 years ago when I was 60.I had carboplatin and taxol chemo. I lost all my hair which I found difficult to cope with at the time and for a week after chemo, had terrible pain in my legs and feet but my oncologist prescribed pain relief for that problem. It’s worth going through the rough times because as I said it’s
10 years ago and I haven’t had any recurrence since 🤞
Also there are many friends who didn’t make it when I first joined this site so I think I’m very lucky and had the best treatment possible. Good Luck with your next journey xx
Thank you so much - I've just been told I'm having the same chemo regime as you. Trying to focus on the message that it's worth it if it works! Thank you for the well wishes and so glad to hear you're still doing well x
Hi! I was diagnosed with Clear Cell stage 1a about 5 and 1/2 years ago. I went through the complete surgery and followed with 5 rounds of carbo/taxol. I have remained in the clear since then. Chemo wasn't much fun, but you adjust. Everyone responds a bit differently but definitely stay on top of the anti nausea meds! My biggest issues were fatigue and aches in my legs and a metal aftertaste to everything I ate or drank (honestly I think I hated that the most, LOL). I also had some neuropathy in my fingertips but it went away after I was done (look into L-lysine to help with that) As far as working... it would have been a bit of a challenge, but you will just have to see how your first treatment goes. It will give you a pretty good idea of what to expect each time. Then you are more prepared to deal with symptoms ahead of time.
I was diagnosed with stage 1c clear cell last year. I had cancer cells on the surface of the ovary. I was unable to have chemo because I had an open wound and my Oncologist and I both came to the conclusion the risks outweighed the benefits. He did say that 99/100 Oncologists would recommend having chemo. My last 3 scans have shown no evidence of disease which my surgeon says is ‘encouraging’ at this stage. I’m keeping my fingers crossed that the results are the same from my scan next week.
Thank you for responding and best of luck with your scan next week - hope everything stays encouraging!
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